by Barbara Agosin
“I'd like to take the paper home and read it tonight before signing.”
“There is nothing to read,” said the Resident. “Just so I am clear about this. If your husband has a cardiac arrest tonight or stops breathing, you want everything done to save him. That includes paddles, intubation and other so-called heroic measures. Is that correct?”
“No, that is not what I want. That is not what he would want.”
“Then you need to sign this form and sign it now, not tomorrow or the day after.”
Putting pen to paper took only a few seconds, but the reverberations of the blue ink staining the white paper still echo through the cells of my being. I am, two days later, feeling hollowed out. Mind and emotions have shut down in a familiar circle, the wagons pattern. Don't think, don't feel, they admonish. It is too much to process. "It" is not the issue. The "it" is I. I do not want to process what these little blue squiggles I placed on the paper really mean. I desperately do not want to be, should the occasion arise, the one who says, "let him die." All I want is for this to go away and return to life, love and happiness as it was 10 years ago. Wanting, however, is no match for the death march winding its way through my husband's brain.
It is not as though I haven't played a variation on this theme before. Many years ago when my father suffered the last of many strokes, was in a coma and on a respirator, our family doctor told my mother and me to "pull the plug because if he begins to breathe on his own you will have a vegetable on your hands." My mother, who had reached her decision before my arrival, gave me the time and space I needed to make my decision. I anguished and vacillated. We discussed together and cried together. I spent long hours sitting beside my father, talking to him, telling him I loved him and stroking his hand. Two days later when my father finally untangled his contorted limbs into a more restful-looking position, I said, "Please turn off the machines." My regret was not then and is not now that I asked for the removal of life support, but that I was not with him when he died during the night. My father died alone, locked inside himself, pretty much the way he had lived his life.
Now my husband is locked inside himself with whatever memories escape Alzheimer's wastebasket and dependant upon capricious, unreliable brain cells to process the present. His ability to talk circles around anyone has evaporated into the mist of aphasia.
I know what I want, and it is not this. I know what he wants, and most emphatically it is not this. The blue squiggles on the Do Not Resuscitate order reflect this unwanting, as well as the fact that I've not adjusted to the loss of this man in my life.
To say I miss his conversation, his smile, his eyes looking at me, his curiosity about life, his playfulness and his hands on my body - oh God, how I miss his hands on my body - is to skim the surface of loss and grief. What has been lost is unfathomable, unwriteable. As long as he is here, no matter how compromised, total loss is held at bay.
What do I hang onto? Lips and eyes that smile as I enter his room, a kiss on the cheek, a hand brushing the hair out of my eyes, a gush of unintelligible words? Believe me, I'll take whatever I can get.
I know full well that little by little these things will be stolen from us and that eventually I'll be alone with a few photos and memories. Letting him go is not easy. However, I think love requires me to leave him free to go where life and disease are taking him without being burdened by my sorrow, my clutching at what was and no longer is.
Loss, grief and love fuse together in two words. Sign here.